SANE (UK)

SANE UK "was established in 1986 to improve the quality of life for people affected by mental illness following the overwhelming public response to a series of articles featured in The Times newspaper entitled The Forgotten Illness. Written by Marjorie Wallace, now SANE's chief executive, the articles exposed the neglect of people suffering from schizophrenia and the poverty of services and information."

Funding
SANE is registered as a charity and accepts donations, funding and monetary awards from companies, including those in the pharmaceutical industry.

In 2004 UK House of Commons Select Committee on Health SANE and other industry-funded patient groups were criticised by Paul Flynn, the Member of Parliament for Newport West, for their failure to expose or criticise suppression of negative clinical data by the industry.

In 2005, SANE endorsed a Janssen-Cilag schizophrenia survey aimed at UK psychiatrists,  the "Relapse & Compliance  Survey",  with SANE receiving a donation from the drug company for each questionnaire completed. All patients surveyed were required to be on oral antipsychotics.

In 2007, SANE's founder and Chief Executive, Marjorie Wallace, expressed pleasure at the arrival of Janssen-Cilag's "innovative" atypical antipsychotic, Paliperidone / Invega, which is "an active metabolite of risperidone" and is the follow-up to its drug Risperidone / Risperdal  which loses patent protection in 2008.

In October 2006, SANE launched their "Think Twice" campaign. This initiative was "developed in partnership with Lilly UK, which has also provided funding". The purported aim of the campaign was to highlight rates of relapse in "schizophrenia, schizo-affective disorder and bipolar disorder" based on data from an online and telephone survey of 108 sufferers over July and August 2006, and in doing so to strongly promote the long term use of licensed psychoactive drugs by attempting to present biased one-sided data as if it were scientific evidence. An example of this bias is shown in their Handbook where statements such as the following:  "Discontinuing treatment increases the risk of relapse by almost five times and 88 per cent of carers surveyed felt that stopping medication had contributed to a relapse" are made but where SANE fail to make any attempt to clarify the significant difference between "relapse" and withdrawal-induced supersensitivity / rebound psychosis and mania.

They also swiftly gloss over the topic of side effects. Whilst they say "The occurrence of unwanted side-effects is a common reason for people to stop taking their medication" they, like their campaign partner Lilly, fail to give to trusting patients or carers, who may consider a patient's group handbook a reliable source of information, any warning of treatment-induced adverse events such as akathisia or draw any attention to the potentially serious risk implications if such treatment and/or discontinuation problems go unrecognized and unaddressed. It should come as no surprise then, that SANE's handbook has not been updated to include the June 2007 news that the conclusion of a long term study in the United States is that "people with schizophrenia NOT taking antipsychotics are more likely to recover".

In December 2006, SANE and the Depression Alliance, in partnership with and funded by Lilly UK and Boehringer Ingelheim, developed the "Now We're Talking!" campaign and began by sending out their initial surveys to members of the two groups. The 427 responses were analyzed by a market research company. This was quickly followed in 2007 by the campaign's effort to a) encourage GPs to take into account a large asserted number of physical ("somatic") symptoms of depression and relapse in addition to psychological symptoms, and to actively look for depression in a wide range of physical disease areas before considering an initial diagnosis and b) encourage patients to increase their own awareness of such symptoms of depression or relapse and highlight them to their GP to "help them" with their diagnosis, as described in Depression Alliance's report

Contact
1st Floor Cityside House, 40 Adler Street London E1 1EE Phone: 020 7375 1002 Fax: 020 7375 2162 Email: info AT sane.org.uk Web: http://www.sane.org.uk

Related Sourcewatch

 * Patient Groups
 * Patient Groups/UK
 * SANE Australia
 * Patient Groups/Australia
 * Patient Groups/Europe
 * Patient Groups/International
 * Patient Groups/US
 * Patient Groups/Canada